Brynnon’s Story…

B R Y N N O N ’ S     S T O R Y
A life with Epilepsy… Intellectual Disability…
IT TOOK US 12 YEARS TO GET HERE…
 
AND UNDERSTANDING BRYNNON’S JOURNEY HAS REALLY JUST BEGUN….
Pregnancy, Birth and Beyond…
Born in Nashville, TN on October 20, 1999. His birth, uneventful with the exception of internal monitor placed due to him being a little stressed… Time to push… NICU called he had swallowed the meconium.
No cry… seemed like forever to get him cleared out, then the miracle of birth seemed complete. I heard the cry, that sound you long for…. the one where you know everything is okay…
I held my baby boy and we began the bonding process of Breastfeeding. Brynnon never seemed to latch correctly, we were told to supplement and we did. He loved the formula so much, he wouldn’t breastfeed anymore. Cereal was added to keep him from vomiting after feeding and he seemed to eat more, must
like the texture better… He is such a good baby, he really likes his swing.
I guess this is colic, never had a baby cry so much. The gas is so terrible… he cries and pulls his legs up all the time… So sad when you cannot console a little baby, all the singing, rocking… just doesn’t seem to help my little baby.
I decided not to give him anymore vaccinations. I did twice at 3 and 5 months. He screamed a lot… for 2 days… Doc says this can be normal for some children with the DPT shot. Poor baby a respiratory infection within the week that lasted 3 weeks both sets of immunizations. He is a lot different than my other three children. Boy, were people right when they said said every child is different!
He’s a year old now… What a beautiful blond hair, blue eyed child! He grunts more than he even tries to talk… He seems fascinated by anything that moves! He will play and play for hours with a wheel… He’s stubborn too… Still throws fits, especially at night… 
He is 18 months and walking now! Running really,
he gets so excited he runs into the walls sometimes. He seems to wake up running and fall asleep standing up, literally!

He’s already two years old! What an active little one he is! The fascination is still there… with anything that moves! He loves cars! He is fascinated with tools too! He still has trouble sleeping at night and bangs his head often on the baby bed… on the floor… on chairs…. On the coffee table… I don’t understand why… We
are having trouble potty training… Doc says every child is different, it’s nothing to worry about… We are back in Mississippi now. He loves to pee on trees and there are lots of them at our new home! 
He’s 3 years old now! Wow, how fast time goes. He still wets the bed at night and has this fear of pooping in the potty. He has pooped in shoes, his closet and I am pretty sure he is peeing in the trash can in the bath room. The Doc says that he is not talking because he has older siblings. She says why should he talk
if he gets what he wants by pointing. Still coming in our room and sleeping with Mommy and Daddy, we are working on making him stay in his own bed. You should see the way he lines up his toys! By color, shape and size! He seems to spend days getting things the way he wants them, sometimes he gets so frustrated things aren’t the way he expects them he still bangs his head. Speaking of banging, Brynnon bangs everything! Always making noise… Our home has constant noise, yelling, banging, slamming… So much noise… I have noticed too that he seems to have a very high tolerance for pain. He is very clumsy too, always running into the wall, falling… Doc says he is just so overactive and my other children were slugs!
 
I can’t believe he is 4 already… He loves to sing… LOUDLY Yelling… Doc says he has so much competition in a house with so many children. I need to start correcting him on his speech, he should be speaking more clearly by now. I don’t know why others can’t understand him, we can…. We need to paint this place soon… the walls are covered with Brynn’s artwork… I have resortd to keeping all our home school pens, pencils and colors on top the fridge… It’s the only place in the house he can’t get to!
 
Looking for answers…
Brynnon’s 5 now! We had a baby boy two weeks before his birthday! He is going to speech therapy now at the public school. She says he has a severe articulation disorder. Almost as though he has his own language.
We can understand him, because we listened and learned it as it developed. He’s going to need a lot of speech therapy to be able to speak his message to the world and be heard. Maybe this is why he is having such a hard time Reading. Dyslexia maybe? Let’s get him speaking correctly and I bet he will start
Reading like a pro! He seems so immature for his age, maybe this will be helped by getting his message out, speech can affect a child so much. It must be so frustrating for him to have Mom interpret what he says to everyone… I finally let them catch him up on those vaccinations…
I cannot believe Brynnon is 6 years old! Speech therapy has helped him already. He still has trouble with some words but we are working hard! Still no luck with the Reading though. We have tried hooked on phonics and several other Reading/Phonics programs to no avail. Maybe he is just immature… We will
focus on the Speech and Writing for now…
 
Brynnon is 7! Speech has helped so much that almost everyone can understand him now. Reading has not progressed, but he is writing well most days and can recall every sound each letter makes. Some days it’s like we are starting over, I just don’t understand why… It’s like going 3 steps forward and two steps back every few days… We are not giving up! I realize that he is a bit immature for his age, but how long is too long?
 
Brynnon is 8! Wow, what a great child he has turned out to be. Still fascinated with anything that moves… especially the riding lawnmower! He loves that thing! Tools? What! This child will trip over his own feet to play with tools! Deep in my heart, I know something is wrong… There has to be a medical reason why he is not progressing… Why he cannot read anything besides that old Merrill Reader with no pictures… Doc says that mark on his face is called a Cafe’ au lait spot. She ran some blood work and said everything looks good. Still no explanation with his slow learning. Maybe he is like his brother and has ADD or better yet ADHD he is awefully hyper? I did find the Merrill Reader set on line, it’s actually used for Special Education in schools. I got the whole set for him.
 
Wow, Brynnon is 9 now! What progress he has made with those Merrill Readers. He is still Reading at a
Kindergarden level, but hey he IS Reading! We made up flash cards with all the words and we do these every day, seems to be helping him so much! It is so exciting to see him “get it.” If only he could get addition…
One thing at a time! Focus on the positive!!
It was as if the whole world stopped….. In one split second.
In S L O W M O T I O N….
I watched in horror as he laid on the floor jerking, foaming at the mouth…. His Daddy with him talking to him, calling his name… 
Brynnon, Brynnon…. Oh GOD please help him… I think it’s a seizure… 
He’s not breathing… I am screaming to the operator… 
Flagstaff Street…. F L A G S T A F F Street… 
Oh my God, please Abba Father…
Please help him breath… What is happening…. Oh God please make it stop……. Flagstaff is on the left…… Oh God please hurry…… 
He is breathing…… He stopped Jerking……… He won’t wake up…….
Thank God the ambulance is here…
Doc says a Seizure can happen to anyone, there is no reason for Brynnon’s. His blood work is good, has no fever… It’s Extremely Rare to have a Seizure while sleeping. He probably will never have another, but if he does, it will happen when he is awake. Really nothing to worry about… He’s gonna be sleepy for the
next day…
Changes…
Husband has been laid off and we are moving back to LA, our home state… We are gonna miss MS so much… One of the first things when we get there I am going to get Brynnon tested, there is a great place there. I may finally know what his Learning Disorder is and why he still cannot read… Other than that
Merrill Reading program… He gets adding and subtracting but still has so much trouble with bigger numbers. Again, it’s like we take a few steps forward then a few backwards… Some days it’s like starting over. I just don’t understand…
I took Brynnon to a Psychologist for testing. She says his IQ is borderline. He cannot be diagnosed with a Learning Disorder, because he does not have a normal IQ. He may only obtain a 4th Grade Reading level or he may do better.
There are further test she can do, but it’s really not going to help me teach him. He can learn, just at a much slower pace than one with a normal IQ. 
I also took him three hours away to a good Neurologist, just to double check. I was pretty much laughed out of his office for suggesting that I thought that seizure he had affected his IQ and that for all I knew he could have had other seizures while sleeping…. Put a baby monitor in his room, you will hear him…
Brynnon is 10! He has learned so much over the last year… We moved next to some really great people. They are always fixing something. Motors, anything that runs he is greatly fascinated by and loves to collect
broken stuff that has parts. Our yard may look like Sanford and Son’s at times, but hey Brynnon is happy! Still working in the Merrill Readers and we have been using the AVKO Sequential Spelling Program with Great Success!! He Spelled “Beginning” the other day! He was so excited that he Spelled a 6th
Grade word! Seems he is gaining so much in his learning journey! I still cannot believe that the Father blessed me with a baby girl! Brynnon and everyone else is so fascinated with his new baby sister! She was born prematurely due to pre-eclampsia and gestational diabetis… What a blessing! 
 

Brynnon begged to sleep in the living room tonight. 
So, on the spfa bed he sleeps, along with Brett… I am sitting nursing Abigail is who now 3 months old. Such blissful quiet in the house, normally filled with so much noise…
Until…. Brynnon….. Brynnon….. Oh GOD Please No…….
Screaming for help, no one can hear me…. 
He’s not breathing….
HELP…. Okay, I can do this… Turn him on his side….
His Daddy comes… Gets on the bed with him… Holding him……
Time always seems to go so S L O W L Y….
911… My Son he is having a Seizure…. Mary Road….
He is not breathing…….. Brynnon Marsh, he will be 11 tomorrow…

EPILEPSY…
I have been sleeping with Brynnon and Abigail on the sofa bed for almost three months. I have seen so many seizures now. Twitching jerking stiffening…. All night long… Waiting to see the Doctor… So many things going through my mind. I must be a horrible parent… How many times has this happened and no one knew? How many seizures has he had while the whole household lay sleeping?
EEG shows Epilepsy… Seizure Disorder… Type? No, not specific… Does this have anything to do with his IQ, did it cause it to be lower? Hard to say… He’s going to start a medication called Trileptal to control his seizures.
Trileptal is making his behavior worse… Switching to Depakene… 
Ah, Better behavior at least… or maybe at this point we just got use to bad behavior…
I really believe he has regressed… He has went back to the beginning in Reading… 
We got this wonderful Emfit Seizure Monitor through The Danny Did Foundation. I am resting so much better now. Every night we have a routine. Brynnon goes to bed, I stay up a while and check on him, make sure his Emfit Seizure Monitor is on along with the baby monitor. After all, Doc says if he has a seizure it will be
the first few hours after falling asleep….
I think Brynn is having a seizure… The words echoed in my mind…. 
Handing Abigail to somebody… I can do this…
TIME… What Time Is It?????? 1:39 AM…. 
Oh GOD he is not breathing… Call 911, we are supposed to wait…
TIME??? 5 Minutes…. He is still not breathing…
His lips are blue… His chin is BLUE… CALL 911….
He’s not breathing…….  I am Suctioning his mouth… 
He’s still not breathing…. Oh Father please let him Breath…
Okay time he is breathing and lightly jerking…. Time…. 12 minutes….
He is going into another seizure I think… Okay, Brynnon stay with me… 
He is having another seizure I think… and another…
Fire Department is here… Ambulance is here… 
A shirt… I can’t believe I forgot his shoes….
Had Brynnon tested at the Neuropsychologist office…
Turns out he has the mentality of a 6/7 year old… My mind feels numb… Scale back Reading to a entry level 1st Grade. He is not capable of Reading anything at a higher level. 
Why does this have to be so difficult to hear?
Math, he is on a 2nd Grade level he can work on an early 2nd Grade level. 
You cannot push him or you could do more harm than good. 
He has a very low attention span, and can only be taught in 20 minute sessions….
If he can handle an hour on the computer schooling that is fine, but if you notice any stress stop… and go back later if you like. So, all that… all that time I knew something was wrong.
I knew… I knew everything he said, and have even said the same things…
…yet it seems hard to hear when it’s coming form someone who actually 
knows what they are talking about…
…..finally we have some answers…
 
If Brynnon never had a seizure would he be normal? “Unfair question.., 
He likely was born with an intellectual disability, but the Epilepsy probably has caused further damage, no way to tell really….”
Brynnon will be 12 in two weeks. We will have his 24 hour EEG results next week…

The world must be different for Brynnon, 
It’s not a bad thing… 
It’s “His Normal”
We love him just the we he is!
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